High ferritin post transplant

[Dodders]

I had my now 6 monthly blood test the other day with a follow up call from a haematologist a few days later. My results were all ok except for my ferritin, which at 3000, the Dr said was on the high side and booked me in for venesection once a month for the next 3 months. When I asked why that might be she said it was due to all the blood transfusions I'd had prior to, during and post SCT. That makes sense, but I am puzzled as to why this did not arise or come to light some time ago as I had my SCT almost exactly 3 years ago and the last blood transfusion some two and a half years ago. I can only think that the haematologist, being a new one for me, has a different approach to ferritin levels. I should have asked during the call but as always I tend to think of questions to ask afterwards.

[hunter5582]

Normal ferritin value range varies by lab and by gender. Typically the top of the normal range is somewhere between 300 - 336 nanograms per milliliter (ng/mL) for a male. Something lower for a female. I am wondering if the 3000 number you were quoted was using a unit of measure other than ng/mL. It would not make sense that you would have a 10X higher level than the top of the normal range. It also seems a bit odd that this is an issue 3 years out from your SCT. I would definitely be seeing a clear explanation from the SCT Specialist. Not sure if that is the doctor who called you. I would check in with the right expert to ensure you understand what is going on.

Please do let us know what you learn.

[Dodders in reply to hunter5582]

Thank you for replying. I spoke with one of a CNS at the QE Birmingham where I had the SCT and she said that this was not unusual and that post SCT patients will have delayed venesection 2+ years after the SCT and this done out of precaution to ensure that things have settled down which they have.

[DJK12]

This certainly seems odd that it has only now been picked up. My ferritin levels hover between 1300 - 1500 again due to blood transfusions. I haven't had an SCT but transfusions for many years. The form I take to the practice nurse for blood tests rings ferritin as an additional test and if it isn't I remind them to include it. Could it be it just wasn't being tested for some reason? Certainly the print out has 20-300 ug/l as normal levels and my result is in bold and marked high.

When ruxolitinib caused even worse anaemia I was started on EPO injections and when they got my hb to a reasonable level venesections were started. In my case it's a bit like snakes and ladders because I then become anaemic again and it takes quite a number of weeks for the levels to rise and often the next venesection is delayed.

[Dodders in reply to DJK12]

Thank you for replying. See above for an explanation for my question.

[DJK12 in reply to Dodders]

So glad you have got an explanation which certainly makes sense. Hope venesections go smoothly and you get the pesky ferritin level down.

[Simon96]

Hi Tim, perhaps covid concerns/resourcing in the hospital system has influenced the timing. It did mine in NZ. Would be nice if you got away with only three venesections. A more common number seems to be 10 to 15. My ferritin level was 5306 when I started getting venesections. Have had 55 fortnightly venesections (430ml) so far, ferritin level is down to 989. I always make sure I am well hydrated on the day of the venesection. They have ticked past surprisingly smoothly. Best wishes, Simon

[Dodders in reply to Simon96]

Thanks for the reply Simon. Very interesting to hear of your particular experience on this matter. Wow, 55 venesections, I doubt I had that many over the 12 years I had PV!

[MFBMT2011]

I had 30 packs of blood during my SCT (non before) and my ferritin levels were 2400 just after. I have as told that they should have been 50-ish. It was recognised and I was told it would be tackled when I was circa two years out. I then had monthly venesections for 14 months but they stopped with ferritin in the low 100s with an expectation they would normalise.

[Dodders in reply to MFBMT2011]

Thanks for the reply. From what you and Simon have told me it seems quite likely that I'll be needing more than just 3 venesections. I could only guess at the number of packs I must have had 2017-2019 but definitely quite a lot more than 30 so I guess I shouldn't be surprised that my ferritin levels are high. Just a totally unexpected intervention, and slightly puzzled as to why none of the consultants previously mentioned that venesection would likely be needed at some point.

[beetle]

I have not had a transplant but I have been increasingly transfusion dependent for the last nine years. I have found that different doctors take a more or less proactive attitude to raised ferritin. Mine got to 11,000+ before any action was taken. I spent about 4 years using desferioxamine subcutaneous pumps and got to ferritin just under 4000. However, this year with so many hospital admissions and not having a big enough fridge while not at home during bungalow repairs to store the pumps my routine went to pots and ferritin is now back over 7,000. I have now started taking defersirox (Exjade) which is an oral medication that I’m praying I can get along with

Those who know me know I try and find the levity in every adversity. I have found that with very high ferritin when I bruise (often badly due to low platelets) as the bruise heals it leaves a brown stain presumably from iron under my skin lasting for years. As I’m very fair skinned I’m wondering if I could actually go brown when the bruises eventually join up!🤔😂

I hope you can restore your ferritin to normal without too much trouble.

Best wishes, Jan

[Dodders in reply to beetle]

Hi Jan, thanks for your reply. Sorry to hear of your difficulties and I wish you well going forward. All the best, Tim